Transition to Adult Care: Ready Steady Go€¦ · Ready Steady Go: Moving through the programme...

Transition to Adult Care: Ready Steady Go

Dr Arvind Nagra

Consultant Paediatric Nephrologist,

Clinical Lead for Transitional Care

About you…

A. Patient/carer

B. Healthcare professional

C. SCN team

D. CCG member

E. CRG member

F. Manager

Transition

• “a purposeful, planned process for adolescents with chronic physical & medical conditions as they move from child-centred to adult orientated health care.

• A process that addresses their

– Medical needs

– Psychosocial needs

– Educational/vocational needs

Transfer is a single event

Blum et al 1993

Why is transition needed?

IDDM Kipps et al 2002

94 % attending opd in paediatric services 57% attending opd in adult services @ 2yrs

Congenital heart disease Sommerville 1997

70-80% reach adult life; Mean death 25.4yrs

1:5 premature/avoidable

Hydrocephalus Tomlinson et al 1995

FU 100% paediatrics 40% in adult services 95 pts; 13/95 died – presumed secondary to shunt

Renal Watson A 2002

20 renal transplants 8 transplants failed. 7 unexpected

Good Transition

• Improved follow-up

• Improved patient & parent satisfaction

• Improved disease control & disease knowledge

• Improved documentation of adolescent issues

• Improved health related quality of life

• Vocational readiness

White et al 2004, McDonagh et al 2007,

Harden et al 2012

Transition- what do you think?

When would you consider starting transition

A. 1 year before transfer to adult services

B. 16 yrs

C. 14 yrs

D. 12 yrs

E. 11 yrs

10

An adult physician needs to be identified before starting transition

A. Yes

B. No

10

Is transition needed if the young persons care is transferred to the GP?

A. Yes

B. No

10

Can a young person with learning difficulties undergo transition?

A. Yes

B. No

10

Does a transition programme need to be disease

specific? A. Yes

B. No

10

What do young people want

• Start transition early

• Individualised approach

• Honest explanation of adolescent condition and associated health care

• Continuity in health personnel

• Opportunity to see health professional without parents

• Able to express opinions and be involved in decisions

• Address medical, psychosocial, educational/vocational needs

NHS England Draft proposal for a generic transition service specification

Evidence of Compliance with You’re Welcome Young Person Friendly Quality Criteria

Trust transition policy

Evidence of a database and alert system on PAS identifying 13-25 year olds highlighting evidence of commencement of transition

Evidence of a transition care plan and on-going assessment of needs

Young people’s service experience

Transition pathway + guidelines

DNA rates tracked + DNA policy for 13-25 yrs olds

Identified health care professional responsible for transition

Access to multimedia resources and peer support

Ready Steady Go

Ready Steady Go: Literature

• 1998 Bridging the Gap. Vancouver

• 2003 NSF Stds, Bridging the Gap, Good transition

• 2004 NSF – Core Std 4, RCN Transition Guidelines,

Every Child matters

• 2005 You’re welcome (DoH)

Transitions: Young Adults with Complex Needs

• 2006 Transition Getting it Right, Youth Matters:Next steps

• 2007 Growing Up Matters, Transition Guide,

Your Welcome (DoH)

• 2008 Moving on Well,

Tackling the Health of the Teenage Nation

Ready Steady Go: The beginning

• Literature search

• Discussed with other sub-specialities

• Experience from other hospitals - UK , Canada, Australia

• Transition Steering Group – Cardiac, nephrology, respiratory, community,

diabetes, rheumatology, gastroentrology, haematology, oncology

Ready Steady Go: Transition Programme

• What?

• A purposeful, planned process for adolescents with chronic physical and medical conditions as they move from child-centred to adult orientated health care.

• Why? • Reduce morbidity and mortality • Improves vocational success

• Who? • Young people >11yrs with chronic condition

• How? • Ready Steady Go programme

www.uhs.nhs.uk/readysteadygo

Ready Steady Go: Transition Programme

• Knowledge

• Self advocacy

• Health + lifestyle

• Education/future

• Psychosocial issues

• Transition

Ready Steady Go: What’s involved?

Ready Steady Go: Transition Plan

C

Ready Steady Go: Moving through the programme

Ready Steady Go: Each Young person (YP) progresses at their own pace

11-12 yrs YP and carer Introduced to Ready Steady Go programme

11 – 12 yrs YP completes Getting Ready Issues addressed in bite sized pieces

14 – 16 yrs YP completes Steady for progress. Issues addressed In bite sized pieces

16 – 18 yrs YP completes Go. Meets adult team. Ideally all issues addressed prior to transfer. On-going issues highlighted to adult services.

1st adult clinic YP +/- carer completes Hello Issues addressed. by HCP. Periodically completed again to ensure skills maintained and any issues addressed

Carer completes parent/carer questionnaire alongside YP questionnaires. Any Issues addressed.

YP with learning difficulties completes as much as possible alongside carer who is YP advocate

Ready Steady Go: Making it happen

• Ready Steady Go (RSG) documentation

• Information campaign

• Young persons clinic weeks 4 x year

– Promotes transition

• MDT, patients and parents

– Share resources

– Young person friendly environment

Ready Steady Go: Snapshot Feedback Questions Responses

The “Transition: moving into adult care ” helped patients + family understand why they are starting RSG

93/93 agree

The questionnaires were easy to understand 93/93 strongly agree/agree

RSG questionnaires helped focus clinic appt + address difficult issues

90/93 agree

RSG helps ease the process of transition 93/93 strongly agree/agree

RSG improved my practice 21/22

Any questions that would help improve transition? Comments?

All – No Time issues Relevance of some questions especially in patients with learning disabilities

Ready Steady Go: Adoption + Support

• NHS logo

• Sub-speciality groups

– Diabetes, Cystic fibrosis, Epilepsy, renal…..

• Evelina, Leeds Children’s, Nottingham, BCH…

• Adult engagement with Hello to Adult Services

– nephrology, diabetes, mental health, GP…..

• SEND

• Public Health England- example of good practice

http://www.chimat.org.uk/transitions/prof/checklist

Ready Steady Go: Next steps

• Transition website + App

– Generic + sub-speciality links

• Implementing ‘Hello’

• ‘Hello’ to Children’s services for carers

• Large scale study on long-term outcomes of Ready Steady Go

Transition- what do we think now?

When would you consider starting transition

A. 1 year before transfer

B. 16 yrs

C. 14 yrs

D. 12 yrs

E. 11 yrs

10

An adult physician needs to be identified before starting transition

A. Yes

B. No

10

Is transition needed if the young persons care is transferred to the GP?

A. Yes

B. No

10

Can a young person with learning difficulties undergo transition?

A. Yes

B. No

10

Does a transition programme need to be disease

specific? A. Yes

B. No

10

Ready Steady Go: Summary

• A generic programme that works across sub-specialities

• Shifting emphasis to empowering the young person

• RSG succeeds because:

– The staged ‘traffic light system’ is appealing, it’s simple to use, easy to implement and has minimal cost

• RSG-Hello continuity from paediatrics to adults

NHS England Generic transition dashboard

Evidence of Compliance with You’re Welcome Young Person Friendly Quality Criteria

Trust transition policy

Evidence of a database and alert system on PAS identifying 13-25 year olds highlighting evidence of commencement of transition

Evidence of a transition care plan and on-going assessment of needs

Young people’s service experience

Transition pathway + guidelines

DNA rates tracked + DNA policy for 13-25 yrs olds

Identified health care professional responsible for transition

Access to multimedia resources and peer support

Ready Steady Go

Questions?

Arvind.nagra@uhs.nhs.uk